Do We Really Need to Put a Label on Things?

Useful Background Knowledge:

  1. As of the time of this writing, our county has more confirmed covid-19 cases than over two-thirds of all U.S. states.*
  2. We don’t own a car. This makes “avoiding public transportation or ride-share services” challenging.
  3. Our “primary medical provider” is one of those commuter rail trips we are supposed to avoid if we show any symptoms away. Once I had a team set up that knew EDS, I saw no reason to upset the apple cart when I moved.
  4. Guidelines still recommend that anyone who feels sick with any “core” covid-19 symptoms first contact their primary care for a phone screen and only seek out testing if “symptoms progress.”
  5. Neither my Partner nor I run classic fevers. I will run them randomly when I have the flu or strep, but it’s always a coin flip whether any given illness will trigger one. Even when I do run them, I swing wildly between “above normal” and about 95 degrees over the illness course. My Partner’s baseline body temperature is 96 degrees, and he can count the number of times in his life he has run a classic “fever.” If he manages to hit 98 degrees, I know he’s pretty sick.

It is extraordinary awkward, uncomfortable and anxiety-inducing to have to take sick time as a trauma survivor in normal times. I almost always feel an intense “don’t look at me” discomfort from trying to figure out just “how much” to explain about why I am daring to ask for time off. How much do I need to “justify” that I’m really sick, and how much does my inevitable over- and/or under-explaining just make things more awkward?

Taking sick time during a global pandemic – especially when I happen to live in a location where that draws more attention than “usual” – is even more awkward. I really, really do not want to ever come across as a “girl who cried wolf.” I really, really do not do well with calling attention to myself or figuring out how to respond to “do you need anything?” I do not like having people offer to bring me contact-less groceries, even though that is actually really sweet of my coworkers. It still feels like it sets up obligations that will be worse than being politely ignored. I also really, really do not like other people asking “well, okay, but do you think it is…?” when I don’t have a car, don’t quite have a high enough “fever,” and medical advice says I should self-isolate and notify my doctor if things get worse. How does one answer that when no one “official” is providing any comforting labels – one way or the other – that would let me conclusively prove to myself that I’m not “making up” that I’m even sick in the first place?

Oh, and I really really hate that we still don’t quite know how common it is for mildly symptomatic cases of covid-19 to not run fevers. Medical establishments might be comfortable telling a trauma survivor who is sick – but not dangerously sick – to isolate and keep in touch because traveling to testing sites without a car is riskier than staying home, but, it sure will make that trauma survivor feel like anything she says in response to “well, okay, but what do you think it is…” is putting herself out on a ledge.

Whatever thing my Partner and I both have reached that rare level of illness symptoms wherein we conceded we had to take sick time. However, my temperature initially did only its usual bouncing and my Partner’s actually dipped lower. Then – just when I had convinced myself I was probably making all of my original symptoms up because sleeping most of the weekend had rendered me totally “fine” – our temperatures finally spiked a bit. And, we realized we actually weren’t “over it.” My temperature has been running just over 99 this past week, and my Partner’s reached over 98. And, we have found new levels of fatigue to go with the return of our coughing, sore throat and generally crummy feeling.

Despite crashing out right after work (and a couple times for naps between meetings during the day that I made up for later), though, the first week’s experience with sick leave was awkward enough I have been content recently to just tell everyone we are “still pretty tired, but better and it wasn’t like we were planning to go anywhere anyway.” No more attention, please! There is nothing more to see here! We’re fine!

Yet, our lack of any formal testing and now somewhat awkwardly persisting – though thank goodness comparatively “mild” – symptoms have made me feel like eventually everyone is going to say I never deserved any concern in the first place. I keep bracing for that moment when concern (as when my boss texted me while I was asleep last weekend to ask how I was doing and seemed genuinely worried when I didn’t answer until I woke up the next day) inevitably changes to “How dare you have claimed you had a right to us worrying about you? You are so selfish.”

By the standards of our global pandemic – even if the assumption that seems to be prevailing among my colleagues of “well, you both are probably just one of those mildly symptomatic cases. I mean what else could it logically be anymore!” is accurate – we really are comparatively fine. If we’re cases at all, we aren’t cases that require out-of-home treatment. I haven’t claimed anything.

Everyone else has been awkwardly solicitous and drawn their own conclusions despite my best attempts to demure. And, I keep waiting for the inevitable whiplash. I keep waiting to be accused of being a faker or a drama queen.

And because we don’t really know what we have – and we won’t for reasons of our lack of vehicle and our ability to recover at home – and it would be deeply uncomfortable for me to “claim a label” even provisionally that I don’t feel I have any right to claim.

Labels are a thing for me.

I felt immense relief when I finally got my ADHD label. It was a concrete alternative explanation to there being something inherently defective about my character that I could brandish against my own trauma history. I was not all of those things I’d been called (crazy, stupid, selfish, oh my!). I was just ADHD. I have a much more complex relationship with owning ASD. Given my sibling’s situation, “autistic” has featured prominently in both of our trauma histories as “one of those words” that have multiple kinds of bad things attached to them. I still feel very weird about how and when I want to refer to it. I have usually ended up just skirting all unpleasant memories by rolling both up into a single “neurodiverse” label.

Labels have been both swords and shields for me. As shields (as with the ADHD part of my neurodiversity) they have been things I can wave around going, “Look, I really do have something. I’m not just a crazy self-centered freak.” As swords (as with the ASD part of my neurodiversity) they became just another synonym for those same “alternative” explanations for what was “wrong with me.” To hear “autistic” was to hear “You aren’t like your sibling. You don’t get to claim any reason for why you are a [insert list of horrible things here.] So stop ‘pretending.’ You don’t get an excuse.”

Labels are a thing for me, and I know it is a privilege to have been able to even get them in the first place to have a thing about them at all.

Even if I don’t ever feel comfortable personally applying any labels to myself that someone “official” hasn’t formally assigned me using the most “rigorous” testing possible, I also completely accept self-diagnoses of neurodiversity from others.

The US’s lack of access to testing in healthcare fields doesn’t just apply to our utter and disastrous failure to prepare for covid-19. I know well that it applies to too many other labels in the mental and chronic illness and neurodiversity worlds. Individuals of color, individuals from low-income neighborhoods and those who don’t fit the “stereotypes” of what a whole host of other “labels” are “expected” to look like too often have sit with that same level of “But, do I have a right to even let others suggest I might have X,Y, or Z?” that I am presently feeling over whether I’m a comparatively “mild” covid-19 case for many years, often, before correct diagnosis (if they are diagnosed at all.) Self-diagnosis is critical for marginalized communities so long as persistent biases and lack of access remain the norm in psychological testing. I get that. I agree.

I accept self-diagnosis and believe it is crucial to righting past social injustice labels. I’m well aware that just not having a label for whatever has been making my Partner and I feel sick doesn’t mean we can pretend what it couldn’t be. Don’t worry, we’re properly “acting like we already have it” with covid-19! (And you all should do the same, fever or no!)

I just have a thing about labels, and that thing is being poked at uncomfortably with our current “you need to isolate, but not be tested because it’s hard to get to a testing site” situation.

I vacillate wildly between clinging to labels like a security blanket and them being their own form of trauma. Thus, I have to admit, I kind of wish either my Partner or I were running “enough” of a fever right now to somehow “have” to get an “official” covid-19 test. Something “official” – and external to what the bully-in-my-brain and past voices still tell me is my fundamentally “selfish” nature – would just be able to “settle” things, right? I’d either be able to conveniently deflect all those “precarious” shows of concern with, “Oh, don’t worry, it was negative” before they can turn south on me, or I’d be able to tell myself “I tested positive, no one can turn this around on me and claim I was making anything up.” Either way, it wouldn’t, at least, just be me speaking about me anymore. It would be “real.”

My Partner is content not to be able to “put a label” on our being sick “officially.” In theory, I am content to follow guidelines, self-isolate, and recover at home without a label for the episode. In practice, it has become one more reminder of how complicated labels are for me.

Thus, I was very glad to read that supposedly we’re getting widespread antibody testing soon. Maybe, at least, soon I will be able to actually put one of those external labels on things that I really shouldn’t need to not beat myself up, right?**

*I add “at the time of this writing” because too many states are “re-opening” next week and will very likely provide some competition for my area (at least at the state level) in the near-ish future. Good luck especially to anyone in Georgia who regrets the last governor’s election being so marred with refusals to recuse, voter suppression and other outright nastiness that they now have no way to avoid being exposed.

**At least, until Useful Background Knowledge #6 – “My Partner doesn’t build normal antibodies to things. He got chicken pox as a kid, but later had to be vaccinated against it anyway because he never developed antibodies the first time” – mucks that one up, too?

Need a recap of anything I’m talking about in any post? Check out my Glossary of Terms.

19 thoughts on “Do We Really Need to Put a Label on Things?

  1. I understand your feelings on this……when I finally started receiving diagnoses, I was relieved that I wasn’t crazy. Now, due to living with so many weird symptoms, I would have no way of knowing what was going on unless I was very sick.
    I hope today is as good as it can be for you!

    Liked by 2 people

  2. with a “lower than the norm” normal temperature while you are well, you simply need to know…if your temp goes up 3 (THREE) degrees, it is “enough” of a fever to warrant medical intervention of some sort. if it rises more than 3 degrees above YOUR normal temp a covid-19 test is damn near mandatory. Hope that helps you guys. if a med pro says “you need a temp over 101 and another symptom”….tell that moron YOUR normal temp is this and it is now above it by however many degrees. your partner is in a GOOD category for testing as he has a “coexisting condition of antibody non-production”.

    Liked by 3 people

  3. Thank you for sharing this. You don’t owe anyone an explanation for taking time right now in case of illness. In fact, I would argue that the hypervigilance of trauma survivors like us is what the world needs most right now. Allow yourself to retreat if needed and if you can’t retreat into self-isolation and don’t qualify for testing, simply do your best. Until the system allows you to stay home with pay at the first sign of illness, to expect more is unkind at best.

    I am currently dreading my partner’s return to work tomorrow. It’s very triggering and we have had some symptoms in the house that are COVID-like. It’s probably just a regular seasonal virus, but I would feel better isolating everyone in our family. How do you fight this “get back to normal” attitude that is prevalent right now?

    Liked by 3 people

  4. Sounds confuzzling for you.
    I hate labels in one sense and love in another. I love where it explains I hate where it defines. I definitely fit all the symptoms for various labels at different times. I don’t know if I’m glad I was never diagnosed (tested more like it, except for one psych I paid a fortune for that put in words I didn’t say and skipped what I did day in his attempt to fit a label he would’ve fit if he’d listened at all) but I’m glad I read up I’m glad I heard titles. I’m glad I took an adhd questionnaire and saw maybe I’m not crazy.
    I can understand just a little why you need it. Definitely get the deserving etc. I hope the testing helps you. Either way you do deserve it…
    Sending hugs, sunshine and support your way. Along with virtual chicken soup.
    Love, light and glitter

    Liked by 2 people

  5. Does your area have public health orders for people to self-isolate if they have possible symptoms? Where I am they say anyone with possible symptoms needs to self-isolate for 10 days. The approach here hasn’t been to test people with mild symptoms, since getting a confirmed diagnosis doesn’t actually change anything for the person.

    Liked by 2 people

    1. That is officially still our policy, but testing has gotten way easier lately. We weren’t recommended testing initially; though, we did do the screening just because we wanted to be responsible. Now it has been long enough, we have elevated temps (albeit not exactly traditionally “feverish”) and were feeling wheezy (albeit not dangerously so) that we could get tested if we wanted. But, we don’t have a car and the testing facility nearby us isn’t set up for walk-ins. We’d have to take public transit to get to other local ones – which is where the “yes, we could recommend you for a test, but if you have something else you’d be exposed since you can’t do the drive-through and if you have it you might expose others” comes in. So, yes, the final recommendation was to just self-isolate and monitor symptoms. However, the fact that testing *is* available in our area, at least for those with cars, is what makes it particularly ambiguous feeling. Ironically, we’re still carless by choice. We didn’t move that long ago, and owning a car is just so cumbersome we’ve been putting it off. This experience of “testing is available, but only to those who have cars locally in a really practical sense” has actually really been eye-opening. We are only on a rail line now, not directly on a subway, but there is a baseline level of economic privilege required to own a car still out here. I feel like I’m understanding even one more reason why covid-19 infections are so disproportionately hitting those of more limited economic means in my area. In areas that are set up to be carless, no one can afford to live there. In areas that are more affordable, testing just assumes you are far enough out in the boonies to own a car. That leaves a whole group falling in between. We’re fortunate that we can just self-isolate and, mildly symptomatic with covid-19 or sick with something else entirely, it doesn’t super matter. We’re doing okay, and we can just work from home. But, I know lower-income families across the U.S. use buses, etc. more. If even *my* area, “commuter-friendly” as it is supposed to be, isn’t equipped to do walk-up testing outside of the densest urban areas, how ready are we really for “opening up” anywhere? But, yeah, I agree in principle with the advice to self-isolate and not worry about labels even if technically testing is available (to those with cars.) But, ambiguity sucks.

      Liked by 2 people

      1. That isssue of privilege is definitely an important one. So far my city has been able to avoid any major outbreaks in our really impoverished skid row neighbourhood, but it seem like such a ticking time bomb.

        Liked by 1 person

  6. recovering from illness is a full time job and you don’t need the bully in your head interrupting that recovery process.. sounds like yours is a high risk city to be in right now. I’m actually in atl and it is chaos with some places reopening but many restaurants and businesses have banded together and decided to wait it out for longer.

    Liked by 2 people

    1. On the list of “headlines I never wanted to see from a non-satire newspaper” today was the Atlantic’s article about your re-opening: ‘Georgia’s Experiment in Human Sacrifice.’ Everything about that situation makes my blood boil. I hope you are hanging in there and able to stay safe through the chaos. Hugs.

      Liked by 1 person

  7. I hope you both feel better soon. Sending hugs and a prescription from a NON-MEDICAL “doctor” that states: Avoid feeling selfish or guilty for putting your health ahead of the bully in your brain. It’s an extra-strength BIYB relaxant with a subconscious delivery. Patent not pending. 💜💜

    Liked by 2 people

  8. I have crazy mad allergies and sinus problems so at any given time, I sound sniffly and may have a cough so I am leery to go out and have the villagers bring their pitchforks my way. Now I hear they are using infrared camera drones or some crap that detect the one person in a crowd who coughed.
    This is not helping my mental health, at all. Gonna need a new label for how this pandemic impacts our mental state in the long run, I fear.

    Liked by 1 person

    1. We had an apartment on our floor catch fire…oh, some number of weeks ago that I can’t estimate right now because I have no sense of time without external markers. We both inhaled enough smoke to be coughing, plus the allergens hit us when we went outside for the first time in weeks. I was worried when I went to get stuff at the local pharmacy while we waited to be let back inside that the cashier would think I was sick. My Partner started consistently running almost three degrees above his normal shortly after this post. He feels like he has the flu, and I feel like I’m kind of permanently in that stage of just *recovering* from the flu without quite the “having” it to the same degree he feels. But, no sniffles or sneezes or postnasal drip, at least. Makes it easier to fall asleep and stay asleep when exhausted. I hate being “sticky,” so any sinus-involving illness is a sensory disaster when I wake up snotting all over things (to be totally grossly TMI about it.) *Not* dealing with that for either of us has been something, at least. I feel like I keep hearing conflicting things about whether your state is relaxing social distancing or not. Do I want to even ask how your family in Armpit are thinking about that matter?

      Liked by 1 person

      1. The faction in town has my sister gone covid prevention insane, but my dad’s faction here….just started wearing masks yesterday. They don’t buy it, it’s a ‘hoax’, people are out to get Trump, blah blah blah….
        I am thankful ignorance is not contagious.

        Liked by 1 person

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